ALD, Cirrhosis, Portal Hypertension, anxiety/stress issues, eating disorder

[Titchie]

Hello 😊.

I am new to this site so you will have to bear with me. Contracted Hep A on holiday. When I got home I was rushed to hospital with jaundice and had liver failure, fluid around heart, going into renal failure, ascites. Basically got given a couple of days to live, but with fantastic help from my Consultant, Dr’s, nurses I pulled through. Spent approx 6 weeks in hospital. During this time had lots of scans, tests, meds, etc. Eventually I was thankfully sent home. I was then diagnosed with ALD/Cirrhosis. Sounds contradictive, but it came as a shock, but it didn’t come as a shock.

I haven’t drank a drop of alcohol since... (approx 3 years).. and I never will again.

I don’t want to take prescribed meds and have managed to cut down from 19 tablets a day to just 2 (Consultant was happy with progress)... However, after having my latest MRI and Endoscopy, I have been prescribed Carvedilol for my Portal Hypertension which has now moved to stage 2.

I have been really worried because on approx 5/6 ocassions I have had severe pain in my stomach (between my rib cage), I actually thought I was going to die (and I have a very high pain tolerance level)... Hence why I’ve been put on these tablets. If I’m feeling this pain at stage 2, I’m really scared by what it will be like if one of my blood vessels bursts... (I’ve had issues with blood clotting and nose bleeds, which I’ve had surgery for)

Any advice from anybody would be most welcome.

Apologies for long post, but it’s as short as I can make it.

Kindest regards x

[AyrshireK]

Hello Titchie and welcome to the forum. Hopefully you'll find us a supportive bunch & a place where you can find any guidance or support you need. I personally don't share your diagnosis but hopefully you'll find folks with a similar experience to your own from whom you can get any necessary help.

Just wanted to say Hi in case with it being that later on at night you didn't get any immediate replies.

All the best to you , Katie

[Titchie in reply to AyrshireK]

So very kind of you to respond. Thank you so much.

It’s taken me so long to pluck up the courage to join. Feels a bit alien to be writing about something so personal. X

[GrandmaDylan in reply to Titchie]

Hi Titchie. I'm relatively new to all this. I was diagnosed about 3 or 4 weeks ago with cirrhosis and varices in the spleen. I'm sorry but I don't know much about liver disease but I've learned a lot from all the lovely people on this site. I'd have been lost without them. I'm sure someone who knows all about your condition will be in touch soon. Good luck, Deb

[Titchie in reply to GrandmaDylan]

Thank you Deb for your response, it’s very much appreciated 😊. I guess we can learn more on our journey from the other lovely people on here.

Take care of yourself x

[Smyally]

Hi Titchie and welcome to the forum.

Portal Hypertension is quite common in people that have cirrhosis. I am also on Carvedilol. You may have this explained to you already but it occurs when the blood has trouble flowing through the damaged part of your liver. The blood flow then takes a diverted route and can flow down smaller veins in the body with this eventually leading to varicies that can burst. The most common place for this to happen is the part of the body between throat and stomach, but can also happen with bleeding from the backside. The carvedilol works by slowing down the flow of the blood and putting less pressure on the varicies to stop them from bursting. I also suffer from HE and can get confused occasionally so I hope this all makes sense, and is not too alarming. Many of us stay ok for months/years as long as we stick with the medication x

[Hidden in reply to Smyally]

Nothing confusing about that reply Smyally. ... very informative 👍xx

[Titchie in reply to Hidden]

Totally agree there Laura x 👌

[Titchie in reply to Smyally]

Thank you so much for your reply. It’s really good of you to explain further. The varices I have are further down toward the stomach, which I am guessing causes this horrendous pain now and again.

Apologies for sounding dull, but what is HE?

The Carvedilol I’m taking has just been doubled. Do you get exhausted to the point you have to go to bed quite a lot? My joints seem to be locking quite a lot and first thing in the morning I have trouble walking. When I’m up and about this eases.

I feel like a pain going to the Doctors so I only go if I’m really struggling. X

[Smyally in reply to Titchie]

Titchie HE stands for Hepatic encephalopathy. Always have trouble spelling it so I always shorten it. It means my liver doesn’t filter out toxins from the body as it should do. Which means toxins stay in my blood stream and can cause confusion in the brain. To be honest it doesn’t take a lot with me. 😜 Yes I do really tired very easily. Can be in bed by 7.30 some nights and take daytime naps and now you mention it I have been starting to get painful joints but I try not to focus on it too much. Like you I don’t like keep going back and forth to gp. I tend to wait until I see the consultant at Addenbrooks

[Titchie in reply to Smyally]

Ah right, thanks for explaining 🤗.... hmmm it doesn’t take a lot to confuse me at the best of times either 😉😆... but I have noticed I’m getting what I can only describe as a brain freeze. I couldn’t remember how to drive a manual car not so long ago which freaked me out a bit, and I did recently put a used coffee cup in the fridge 😳... etc...

I do push myself, which my husband and family constantly remind me to take things easy. I make myself do a bit of yoga because it’s good for me mentally and physically. I find if I don’t, I literally have trouble moving my body... then I have to sleep... it feels like a vicious circle.... but I’m determined to be positive. My fingers locking can be worrying, I’ve dropped and smashed so many things.

Before this, I was so fit, so I get frustrated that I can’t exercise in the way I’m used to. Small price to pay I guess.

You take care of yourself x

[Yvonne567]

Hope you doing better

[Titchie in reply to Yvonne567]

Thank you Yvonne 😊. I feel very blessed to be alive that’s for sure. I just get so angry with myself for getting myself into this situation.

I hope you are ok too x

[Yvonne567 in reply to Titchie]

I feel blessed to be alive have granddaughter she 1/12 year old..stay well

[Garyvh]

Hi Titchie,

This forum has been a huge lifeline for me, I'm not massively active here but I do read it a lot, and Ibe found it, sometimes a lot more informative then talking to consultants and Dr's etc.

Hopefully it'll be of help for you too.

I just wondered if they said what impact, if any Hep A had on your liver? Apparently I've already had it as blood tests have shown immunity.

Portal hypertension: I'm not sure but I think this can fluctuate.

When I was hospitalised late last year with Alc Hep my ultrasound results showed that portal flow was normal, and no ascites.

However a couple of moths after being discharged I developed ascites and found out I have grade 1 varices (grade one being just slightly varicose).

Anyway a recent ultrasound showed no changes from the first one, and the ascites hasn't returned yet (thank God).

I may be wrong, as I'm certainly no expert, but it does make me wonder if things might improve for you as, hopefully your overall health improves.

[Titchie in reply to Garyvh]

Thank you very much for your response.

In a way contracting Hep A from either poor sanitation, food etc, actually saved my life. If I hadn’t have caught that, I wouldn’t have found out I also had Cirrhosis.. I hadn’t drank for some time, because through stress from work I had had a suspected TIA, so I gave up. The damage to my liver will never recover, it will only get worse over time. The varices have gone from a grade 1 to a grade 2, and I also have nodes on my liver which my consultant keeps an eye on, just in case they turn cancerous, which really is scaring me. I’ve been lucky enough not to have ascites since leaving hospital, but my ankles swell a bit after doing too much.

I’m so pleased you haven’t had ascites since your last ultrasound. It’s not very pleasant having the fluid drained.

Take care of yourself x

[Hidden]

Hi Titchie

Welcome to our forum.

You will find a lot of helpful information on cirrhosis on our website;

britishlivertrust.org.uk/

We hope you find the forum a supportive place to visit,

Warm wishes

Trust1

[Titchie in reply to Hidden]

Thank you very much for your advice, it’s very much appreciated. Will take a look this evening. X

[jules45]

Hi tiçhie, just let you know Ìve got thè same as ýou and when mý lìvèr first failed 8 years ago I was suffering with anorexia which didn't help my situation, but like you I recovered thanks to staff at hospital. I'm closely monitoŕed by my hepatologist and made my first visit to Birmingham last week with a view to a transplant. My liver has failed 3 times but I'm still here to tell the tale? I get pain in my liver and spleen. I hope you see a hepatologist as you need one. I also suffer with anxiety which I take medication for. Tàke one day at time and keep in close contact with your gp. Joining this site was the best thing I did and I'm glad you did as the members are so very supportìve, best wishes! Julie xx

[Titchie in reply to jules45]

Thank you ever so much Julie. Yes it’s difficult when you also have anorexia. I’ve built up with Fortijuice and Prosource... I was 6.5st when I came out of hospital and nearly 3 year later I’ve suddenly gone up to nearly 10st... It’s really getting me down. Unfortunately it’s psychologically puting me into my old mindset, and even if I don’t eat (which is going to have a further effect on my liver) the weight isn’t coming off.. probably sounds really selfish to people who haven’t experienced it. However, I’ve just had news that I’m going through the menapause, so that is more than likely why I can’t shift the weight 😏... my Dietitian is brilliant, but now the weight is on she is happy enough to sign me off under her care 😳.... my “Counsellor”, who has been dealing with my eating/anxiety/stress issues, now also wants to sign me off without referring me on to somebody else, because they only have a time slot of 10 sessions... I have to go back to my Doctor and be referred back to Mental Health Services, and wait for an “available slot”.... 😞

I’m so sorry to hear you have had liver failure 3 times, once is bad enough. Fingers crossed they will get your transplant sorted at Birmingham 🤞🏼.

As for Hepatologist, My Consultant falls in with Gastro and Hemotology... I’m guessing it’s the same?

As for taking medication for my anxiety, I have been offered, but I have refused as I don’t want to put any toxins in my body unless I have to. I’m trying to do things naturally which my GP fully understands. So lots of meditation, freshair and yoga when my body permits, I also need to be on my own. I have a very understanding husband and good people around me which is a plus.

Yes I’m glad I’ve joined as I feel like I’ve been listened to and not judged. Everyone who has responded to me have been so wonderfully kind.

Take care of yourself, and let me know how you get on xxx

P.s. I’m so sorry for my long reply 😉

[jules45]

Hì titchie,, thanks for your reply. I agree the weight gain is depressing having been anorexic 5 times but I've been told to eat properly to keep my liver working. I like being on my own and like peace and tranquillity when I wake.

Ì hope things work out for you, I just take one day at a time, ĺove Julie xx

[Titchie]

Thank you Julie. Xxx

[Andiball]

Have u told ur consultant cause I hadi had sever pain similar to that and I was checked for gal stones, I dont get much pain from there anymore, only really during ultrasounds

[Titchie in reply to Andiball]

Hi Andiball 😊, yes I’ve been telling my gastro specialist nurse and my GP about it for the last year.

I have regular MRI scans, Ultrasound and Endoscopy (down through my Oesophegus and stomach, which showed my varices have enlargened and scarring in my stomach)... My stomach (central to the lower ribs) is so tender to touch and is swollen, yet even though I constantly question about this horrendous pain and have had the tests/scans I don’t seem to get an answer to why this pain is happening. I do worry about the effect of my eating disorder on my liver.

Did they come to a conclusion as to whether it was gallstones with you? I’m pretty sure they’ve alreafy checked this out with me... but will double check....

Thank you so much for your response x

[Andiball in reply to Titchie]

No it wasnt for me, years later I discovered about the adv cirrhosis, when they said no I didnt follow it through I just thought I had to put up with the pain, it did go eventually but also left me undiagnosed for years, I dont worry about my eating disorders because the damage is done and I cant change it, only try to get it right now, its really difficult I know but as a single mum being here for my kids became more important to me. This is purely how I tried to get through it and its my personal option. Theres no right or wrong answers u just do what u can, good luck

[Titchie in reply to Andiball]

I think you are wonderfully brave. You take care of yourself and your children. Thank you once again for taking the time to respond 😊 x

[Andiball]

I also have a very long history with eating disorders